I have a very rare Sarcoma as well. It's called, Malignant Gastrointestinal NeuroEctodermal Tumors. When I was diagnosed in 2017, there were only 29 documented cases in the world. Most recently, I learned that number was about 120 cases worldwide. So it's still a fairly new diagnosis and unfortunately scientists/doctors don't have many answers for treating it since it's so rare and patients pass away rather quickly from it. I have been struggling to survive for 6.5 years now, but my body has gone through a lot and I'm not sure how much more treatment I can have because I'm so beaten up by all the treatments and the disease. If anyone else out there has this, I would love to connect with you! Kris